Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

first PILLCAM test... very nervous... any advice


TaraZ

Recommended Posts

TaraZ Newbie

Scheduled to have the pillcam on Wednesday and I'm thinking of cancelling and rescheduling until after Christmas. I'm very nervous that this thing is going to get stuck and I'll end up having surgery ...

Right now I am scheduled to work a lot during the next 3 weeks because so many people are on vacation. I have been asking for more hours at work cause I need the money and they gave them to me. But I have a history of calling in sick and they don't trust me ... work is complicated but I wanted to prove I'm dependable so was planning on doing a banner job. Then I scheduled this for my day off not thinking much about it, just wanted to get it done. Now I'm sitting here reading all the horror stories of patients that had an obstruction and then emergency surgery so of course I'm now completely terrified to do this.  Even minor complications would not be good if they keep me from being able to work. Uggggg. I hate this. Also reading how the pillcam doesn't even work sometimes and might not be worth doing?

I am probably over thinking this and should just do it. My symptoms are chronic but fairly mild I think?  Symptoms include...

-loose stools (not diarrhea, just very loose) that are light brown in color and I've had this consistently (2-4 times a day) for about 1 whole year now. Have not had a regular hard stool BM in about 1 year.

-Tired!!! I am young(well 43) and fit and surf and windsurf and I even used to be a professional snowboarder. I am in very good shape but over the past 3 years I have become more and more tired. I have problems sleeping so at first I just ignored being tired. But it's gotten worse. On bad days I can do a little activity (30 minutes to an hour) of exercise and then I'm beat. That's extremely unusual for me but is happening more often.

-over the last year have experienced mild nausea after taking vitamins

-6 months of very possible DH! Started in Aug after eating gluten.

That's about it for symptoms. But hears the kicker... I have been gluten free (by choice, I know I'm crazy) for about 10 years now. So all my tests for celiac disease are coming back negative. The DH I mentioned is what started me down the road looking for a celiac diagnosis. Sorry this is such a long story. Again right now I'm just stressed about the pill cam. I'm reading about it and it's scary. I had a clean colonoscopy and then my endoscopy showed a small ulcer in my duodenum, neg biopsy of course. so next is the pillcam.  Thanks for taking the time to read this. Kinda feeling alone with all this.  

 

'


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I have heard from people on here that they worked well.  Never heard of any getting stuck

i don't know what your insurance situation is, but if you have met your deductible or still have " money" left to spend, it might be financially wise to get it done this year.

if you have been gluten-free for 10 years, these problems probably aren't due to Celiac disease.  It is a  good idea to find out what is wrong.

pikakegirl Enthusiast

Understand, diagnosed 2007 and was too afraid to do cam but had endoscope which showed only 2feet undamaged small bowel. Just had pill cam done. I am so relieved because I am fully healed stomach and small bowel. Also had colonoscopy which was perfect. Relieved and surprised due to hard times last ten years. Tips, clean yourself ou as directed. I have a very slow system an after cleanse it take 5 days for me to have bowel movement so I too was afraid it would get stuck but it came out exactly 12 hours later. I used a large stainless stele bowel to catch my bm I was determined to make sure it come through. Be sure to wear cotton top with elastic pants because they put this corset like thing on you that you can not take off. Bending over is hard and chore nearly impossible because the wire and box on the side can swing and knock into things. Don't want to break them. It is easy to swallow with water, I was surprised. or me knowing and seeing the pictures helped me relax and feel confident in my choices over the years of healing and facing the test was worth it but trust your feelings, you are your best advocate.

cyclinglady Grand Master

The risk for the pill camera getting stuck is extremely small.  That said, my niece was in the same position as you.  She was three days from getting on a plane to Europe with her family (including me).  I went with her on her visit.  I thought I would meet her GI.  Instead, it was for the pill camera prep.  My niece wisely chose to postpone the camera just before her huge trip.  This was a good decision because had there been any issues, her parents would have stayed home and it would have ruined (you know what I mean) the trip for the rest of us.  

She took the test the week she returned home.  The test went well, but it found that she had Crohn's Disease which was well out of reach for scopes.  She also did not have typical symptoms either.  She's glad she knows where she stands now.  

With your schedule, stress, etc., it might be wise just to postpone it.  But only you can decide as only you know your current health issues.  We knew that my niece wasn't super sick.  She might have an attack (she did on our last trip), but it was manageable.  

Even though you have been gluten free and had the other scopes, did they give you a complete celiac blood panel?  You might have thought you were gluten free, but not really.....it happens a lot!  

 

TaraZ Newbie

Thanks Everyone! I'm doing the pillcam. I think I was just stressing out reading all the bad stuff online. I decided to talk to my boss and explain my situation. It was funny... he got so uncomfortable about talking about it he just let me have an extra day off and said if I don't feel good on Friday then just let him know...

I'm still a little nervous about the pillcam getting stuck and leading to problems but I'll try to not think about that. So today is my prep day, had a light breakfast and then just clear fluids from now on until 10pm. Tomorrow I take the pill. And then I have the next day off of work which is nice so I can make sure this thing passes. Thanks again for the replys. I was going to put it off but my insurance has a big deductible and also it would be good to get this done and over with. Somethings going on with me... I'm currently losing weight for no reason and I have been eating a lot. I usually gain weight when I eat like that. This happened about 2 years ago... I got really skinny and was tired all the time, not like me at all. Never figured out why. Went to the Dr and metabolic panal was always normal, thyroid normal, Normal B vitamins. I was under a lot of stress at the time so I eventually figured that was the reason. Now I'm getting skinny again. It's just like before. Anyway thanks for reading.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.